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Thread: What Is Next For Jonathan?

  1. #61
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Yesterday, Jonís nurse visited to change Jonís trache, catheter, and to examine his many wounds. Through it all, Jon was wonderful, patient, tolerant, and brave.

    One of his wounds is on the bottom of his scrotum. We are certain that it is from the continuous leaking from his catheter, which weíve been unable to solve. Iíve been applying Calazime paste and covering with an Optifoam pad. She switched to an anti-fungal powder and an Optifoam pad.

    Since sheís a new Grandma, she suggested I try a diaper rash remedy: Butt Paste. Yes, that is what it is called. I looked at her, I looked at Jonís wound, and looked at her again, ďAre you sure you donít mean ĎNut Pasteí?Ē

    I hope you laughed, because we all did.

    None of these supplies can be provided by the nursing agency, and I need a doctorís prescription for them to get them through Jonís medical supplier. So I just went to Amazon today and bought them. Theyíre all OTC. I also bought trache collars and wrist restraints.

    The nursing agency sent the wrong traches to us twice, and I had to call each time to try to get the right ones. I finally prevailed after the third call. I canít order them on line without a doctorís prescription.

    To calm the atmosphere, given all that we were doing to and for Jon, Jim put on a Julio Iglesias CD. When we were finished, Jonís nurse started dancing, then we all started dancing. She and her husband are taking a ballroom dancing class, and she danced over to Jim and said, ďDance with me, Jim.Ē

    She was teaching him the box step, and he was following, as best he could. Jon and I were dancing too, but we couldnít take our eyes off of Jim and Jonís nurse.

    Tears filled my eyes. She loves us so much, and she always calls Jim and Jon her ďfavorite guys.Ē She should be retiring, and they are working her into the ground, but she doesnít want to leave us. In fact, our area was redistricted, and she fought to keep Jon as her patient. New management is really messing with this fabulous nursing agency, and itís so disturbing.

    She said she was concerned that Jimís fatigue could be anemia, but she feels that his color is good. Weíll find out next week, when Jim sees Dr. K and has blood work. But, he definitely feels weak and wanting to sleep a lot. Iím thinking that maybe we should hold off on another Opdivo infusion for a couple more weeks, so that he can recalibrate his WBC and RBC.

    Meanwhile, Jon feels well today, and heís peeing like a race horse. So itís all systems go.

    Thank you all for your love, support and prayers for us. Know that we pray for you too, and send healing energy your way.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  3. #62
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    Rose, What an uplifting story. There really are some very caring people out there in the medical world. So glad she is Jon's nurse. I can also vouch for the fact that music is a wonderful medicine for the heart body and soul. It's one thing that no matter how Kathleen felt it brought a smile to her face. She pretty much loves any and all music. So glad for a successful visit and the care that your whole family got.
    Mary Grace

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  5. #63
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    Aww! I love how the nurse danced with you! Sometimes when the immune system is really working hard it can cause fatigue so I wonder if that's a sign Opdivio is effective and not just anemia. Can Jim eat things with more iron in the meantime just in case?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  7. #64
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Mary Grace ~

    We've been truly blessed with wonderful nurses, and this nurse has been caring for Jon since 2009. She is a member of our family, and we love her so much, as she loves us. I honestly don't know how we would have survived without her all of these years.

    She and I laugh so much, when we chat on the phone, and when she visits. And sometimes, we cry a little too. She brings us avocados from her 40 year old tree (oh, are they fabulous!) and we give her oranges, which I order from a grove north of us (and oh, are they delicious!). We see her every month, so that's a lot of time that we've spent together.

    Jon adores her. As soon as she walks into his room, his arms are outstretched for a big hug. He doesn't flinch or struggle or try to grab her or our hands any more. He just relaxes knowing that she will care for him with tenderness and compassion.

    We always have music on for these visits. It does set the mood and gets us loose and talking, laughing, singing, and even dancing. We're doing quite a few medical procedures on Jonathan, but he doesn't mind, because he has our company and entertainment. And LOVE.

    I know Kathleen loves music and to dance! How is she feeling? What's the latest news on her foot? Please update. Sending healing prayers and thank you for your prayers for us.

    funnylegs4 ~

    Yes, you're so right about the immune system working overtime. Jim is also experiencing RA symptoms, and one of those is fatigue. Fatigue is listed as a side effect with Opdivo, so this is expected. It is rather intense for him, but he's able to rest and sleep as much as he needs to, so he does rebound, as he did tonight, after sleeping most of the day.

    As vegetarians, we do eat veggies, which have iron. Here's a list of the foods needed, and we eat all of them:

    https://www.healthdirect.gov.au/foods-high-in-iron

    Jim does need to cut down on his caffeine intake. He loves his espresso and tea. But he is also drinking a lot of water. And orange juice, freshly squeezed daily.

    We'll know more after he sees Dr. K on Monday.

    Thank you for your prayers, and know that our prayers are with you too.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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